This is the 122nd #WILTW
I am currently in San Francisco at #MedX. The conference looks at new technologies and innovations, keeping the concepts grounded in good design and patient applicability. The team have developed a process called Everyone Included™ which aims to ensure ‘expertise’ is defined by what people can contribute rather than a strict notional concept of what they know. It aims to ensure that all potential participants have been considered. Below is some of the criteria that are required for the highest level of integration.
Medical conferences in the United Kingdom don’t have a strong track record of patient involvement. To be blunt there remains a strong paternalistic attitude that there is little patients would contribute to medical debate. Some of this is based on the correct notion that an academic conference is not a suitable venue for individuals to be seeking resolution of a complaint. Sadly there have been occasions where the boundary between patients telling stories to aid learning and to vent their grief have become blurred. This is neither fair on the delegates or the patient. However these are rare, and are over played as a reason to not allow patients to contribute.
At the first day of the conference Michael Seres spoke eloquently on patients and their role in research (click on this link to play)
and Lucy Kalanithi spoke movingly on the concept of suffering (click here for the video)
There will be some who will say the ‘expert’ patient is not representative of the general population. There will be those who feel that certain conversations would be restrained. And there will be those who cite tokenism. But we don’t really know what the outcomes will be because we have yet to start trying. #MedX has proved it is possible to integrate what should be a unified population of patients and providers. It is up to other conferences to start following suit.
What have you learnt this week? #WILTW
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Thanks for sharing this Damian. I agree that too many people put forward barriers to patient involvement. I have heard of managers actively discouraging my trainees from involving patients in their improvement work! My sense is that this is, in part, a reflection of individual discomfort and concern that it will bring yet another layer of complexity to already pressed workloads and, in another part, a reflection of systems where people who have a say feel (often rightly) that their organisation will not welcome it. The challenge needs to be overcome and what you have shared provides some hope that someday patient involvement will be the norm.